A Lil' Boy's Journey to Live….

It is Official .. Riley is ready for Decannulation!!! The only problem is what I previously mentioned and that is CHOP is a full house. The plan is to Decannulate by the end of October. ENT is working on the insurance and scheduling for admission into either the PICU or PCU. (We would Love to go to the PCU since Riley lived there May through July, but there’s only 2 private rooms.) There is always the hope that something will open up sooner, but 2 weeks should fly by!
As you just read ENT is very pleased with how Riley looks and Dr Kreindler in Pulmonary even more so! He had the nurse pull up Riley’s growth chart and he was thrilled .. literally saying .. “Yes .. Yes .. That is Beautiful!” Since birth Riley has barely even been on the growth chart and now he is climbing right up it. I think just having Riley walking all over and chatting up a storm blows their minds. Not only did Riley throw up all day every day before transplant .. Especially if he had to walk even a short distance, but with the complications he faced after Transplant .. There were many weeks not knowing if Riley would have made it to today. To be able to walk in that office talking up a storm and being ready to Decannulate is a Miracle in itself!
The concern of the yeast from the Bronchoscopy has decreased so we can lower Riley’s Nystatin back down to his original dosage and frequency. Another Yay moment!
Now we just have to try and prep Riley for being inpatient again. He is So ready to ‘throw his trach in the Trash’ but I think Monday was the first time he really understood that meant we were going to be staying/sleeping at the hospital. He very quickly began to get upset and cry about having to ‘Stay’ in the hospital. Riley and his nurse Alisha (Momma Alisha) have a special bond. That being said Riley has a different level of trust with her that we’re going to utilize to prepare for his Decannulation stay. Maybe a little time for Riley to mentally prepare won’t be so bad.
Thank you All for being on this Journey with Us! At 7 Months Post Heart/Lung Transplant Riley is Continuing to Beat the Odds as he Journeys On … ♡♥